"... that we too might live a new life." -- Romans 6:4
"How Can I Live With HIV/AIDS?"
There are many ways you can help yourself be hopefully and joyfully alive when you've been diagnosed with HIV or AIDS. Many of these techniques to foster a quality life come from the experiences of people who have survived HIV and AIDS since the earliest years of the epidemic.
When a person was diagnosed with AIDS in the early '80's, there were no long term survivors to use as role models, and there were no stories of remission or wellness. Persons with AIDS were told they had six months to two years to live, and there was nothing the medical world could do to help.
Some people, however, began to survive and thrive with AIDS even before medical treatments became available. These people were creating their own wellness programs, using what some people call "alternative therapies," sometimes making role models of persons who had survived cancer against all odds.
Today there are many treatments for HIV/AIDS: treatments which can slow the activity of HIV or control other infections associated with HIV, as well as treatments which can protect a person from many of the opportunistic infections which killed people quickly in the early years of HIV/AIDS.
In addition to what the medical world has to offer, there is a great deal that anyone living with HIV/AIDS can do to help sustain life, to enhance the quality of your life, and to improve the chances of surviving beyond the prognosis. As soon as you begin to help yourself actively, you begin to create hope.
Sometimes it is easier to feel hopeless. It takes work to hope. And it takes work to create a quality life with HIV/AIDS.
Why not believe that you can be a longterm survivor? Why not believe that miracles are possible, and that you can do a lot to help yourself? Why not create your own wellness program? Why not fight for your life?
If you really want to live with HIV/AIDS, these are some of the activities which can help:
1) Nurture Your Faith
The Christian faith gives you everything you need spiritually to be fully alive with HIV/AIDS. The Resurrection of Jesus Christ shows us that God is greater than the death of Jesus on the cross. If God is greater than death, then certainly God is greater than HIV/AIDS.
The Scriptures are full of passages which can help you be fully alive with hope for the future. The New Testament has many stories of healing. Paul writes about his "thorn in the flesh" and how his faith helped him handle this. The Bible repeatedly portrays God's love for all human beings, and that includes you.
When the woman in the Gospel of Mark is healed of her twelve-year hemorrhage, Jesus said, "Your faith has made you well." What you believe really counts.
One of the names for Jesus Christ is "Immanuel," which means, "God with us." God is with you on your journey with HIV/AIDS. If you are feeling isolated or scared, remember that God, through Jesus Christ, understands exactly what you're going through: Jesus suffered the abandonment of his friends and disciples as he faced a painful and humiliating death. So how could God have anything but compassion for you in whatever challenges you are facing with HIV/AIDS?
Expect God's grace in every circumstance. God is with you. Nurture your faith in God: believing in God's love for you can serve as the starting point for creating the conditions for healing in your life.
2) Maintain Your Self-Esteem
A number of persons have allowed low self-esteem to keep them from doing all they can to improve the quality of their lives, and fight for life itself. A diagnosis of HIV or AIDS can severely challenge a person's self-image, but this is not the time to give in to feelings of low self-esteem.
Your life is worth fighting for.
If feelings of depression or a poor self-image are preventing you from taking action to create a quality life, find a therapist or counselor who can help you sort through your issues. Surround yourself with people who love you. Give yourself plenty of daily affirmations.
Remember: God loves you. And Jesus' great commandment is to love our neighbors as ourselves. This implies that we should be loving ourselves. If some people loved their neighbors the same way they love themselves, they'd have very unhappy neighbors.
Love yourself enough to do the work of healing.
There are studies which show that persons who are prayed for while in surgery suffer fewer complications and recover more quickly than those who are not. Many persons living with HIV/AIDS can testify to the importance of having your friends and family praying for you. If nothing else, it gives people the opportunity to do something actively for you. So when someone asks what they can do for you, ask them to pray.
You can also learn to "pray without ceasing," (I Thessalonians 5:17). Find a short prayer or scripture which you can repeat with each breath. When you have nothing else to distract you, practice saying the prayer with every breath. Then when you are facing medical procedures, or difficult news, try praying with every breath. It helps you to focus on your faith rather than your fear.
Prayer works. Use it!
Sometimes it helps to think of prayer as talking to God, and meditation as listening to God. Properly practiced, meditation and visualization are among the most effective healing tools available.
If you want to meditate, try to do it more than once each day, as if it were a prescription drug that has to keep flowing steadily through your system. When you first get up in the morning, when you lie down for a nap, or when you're ready to go to sleep at night, put on a meditation tape. These tapes help you to relax and let go of stress, and then help you to visualize your immune system growing stronger.
There are all kinds of wonderful meditation tapes available to help guide you through this process. Or you can create your own, using imagery that is meaningful to you.
Some of the images used in visualization that persons with HIV/AIDS have found helpful include: T-Cells multiplying like rabbits in your blood stream, or T-Cells as little bodybuilders, lifting weights and getting stronger and stronger. Some people with lung problems like to visualize blue light spreading throughout the lungs, or "scrubbing bubbles" moving through, cleaning away any unwanted "debris." People with Kaposi's Sarcoma often visualize erasers eliminating their lesions. People with lymphoma or chronically swollen lymph glands might imagine the glands as sailor's knots being loosened and untied with each cleansing breath.
Again, it is important to make a discipline of doing meditation two or three times daily. Meditation becomes more effective the more regularly you do it. It also helps you face stressful circumstances with greater calm.
5) Eat Wisely
What you feed your body has a tremendous influence over how you're going to do. While there are many claims for a wide range of diets, a sound rule is to get a regular, balanced diet of nutritious foods that will give you useful fuel for your journey with HIV/AIDS.
Fresh fruits and vegetables can give you natural vitamins and minerals. Either peel fruits and vegetables, or wash them thoroughly. Bran or high-fiber foods are important to maintain regular bowel movements, and to avoid constipation. If you are having problems with diarrhea, some physicians recommend the B.R.A.T. Program: Bananas, Rice, Applesauce, and Toast. A diet high in protein and carbohydrates, and low in fats and sugars, is a good idea for general good health. It is recommended that meats, poultry, and fish all be well-cooked to avoid infections or contaminants that could make a person with HIV/AIDS very sick.
If you are on antibiotics, you can replace healthy digestive bacteria killed by the antibiotics by taking acidophilus, which can be found in yogurt, specially formulated milk, or as a powder to mix with juice or water.
Sometimes appetite is a problem for persons with HIV/AIDS. Food may not taste good because of medications, or because of a disease process which affects the taste buds or digestive system. Many doctors prescribe nutritional supplements, or appetite stimulants in these situations. If you can't eat three regular meals, try eating five or six smaller meals throughout the day. "Bribe" your appetite by giving yourself treats that you have always enjoyed.
Many people with HIV/AIDS take vitamin and mineral supplements. There is a lot of differing advice on how much of what to take, but a well-balanced daily vitamin regimen for a person with HIV/AIDS might include: Vitamins A, B-Complex, C, and E, as well as the minerals zinc, selenium, and calcium. Garlic is thought by some to be a potent weapon for keeping the immune system and the lungs healthy and strong. Odorless garlic pills are available in many health food stores. Beta carotene is also recommended for people with HIV/AIDS. Orange vegetables and fruits are generally rich in beta carotene.
Some people believe in extraordinarily large doses of Vitamin C. If this sounds like a good idea to you, check with your doctor first: too much Vitamin C can increase stomach acidity. Remember, Vitamin C is ascorbic acid. If you want to take large doses of C, find its buffered form.
If at all possible, consult a professional nutritionist, in addition to your physician. Many HIV/AIDS agencies can easily refer you to a nutritionist in your area.
Exercise is a vital ingredient to any person's health, but when you have HIV/AIDS, it becomes even more important. Weight-lifting is good for putting on, and keeping on, weight. But there are many kinds of exercise, and it is important to engage in the kind that will keep you interested. The general wisdom of exercising at least three times a week --- to the point of working up a good sweat and accelerating your heart rate --- is good advice for most people facing HIV infection. You don't have to overdo it, but it pays to get the blood pumping, the muscles stretching, and the endorphins flowing through your system. It's not only good for the body, it's good for the spirit as well. It is important to check with your physician before embarking on any program of exercise, whether or not you have HIV/AIDS.
You may need more sleep when living with HIV/AIDS than you have before. Fatigue, a common complaint among person with HIV/AIDS, is a signal from your body that you need to rest. Since your body can do its best healing while asleep, give yourself permission to take a nap during the day, and to sleep a good eight hours at night, if you need it.
The need for sleep varies a great deal, and it's important to remember (for those who have trouble sleeping) that illness can interfere with the normal sleep cycles. Meditation, hot baths, deep breathing, and other relaxation techniques can help you get a good rest.
Give yourself permission to sleep, even taking a couple naps during the day if you need to. If you are working, it is considered a "reasonable accommodation" for an employer to allow a person living with a life-threatening illness to take a nap.
8) Laugh Daily
In his book, Anatomy of an Illness, Norman Cousins tells of his recovery from a life-threatening illness using Marx Brothers movies to make him laugh every day. Some people prefer videotapes of television comedies such as "I Love Lucy." Whatever makes you laugh, make a point of having good, hearty belly laughs several times a day. When you're laughing, you can't be anxious or scared.
It really helps to begin and end each day with laughter. Sometimes you can make yourself laugh just by adding "Tee-hee" to the end of a sentence. Try it (tee-hee!)
Laughter actually has a positive impact on health: like exercise, it releases endorphins, which elevate the mood, and have a healing effect. Laughter really is great medicine.
9) Stay Informed
Many persons with HIV/AIDS find it helpful to educate themselves continually about the latest treatments and research, and the current political activities around HIV/AIDS.
There are many good resources available for keeping informed on the latest developments. UFMCC publishes a newsletter on AIDS, ALERT, which is free to every person with HIV/AIDS. Many people get their information from the gay and lesbian press. Many libraries now carry issues of periodicals such as "AIDS Treatment News," edited by John S. James; "Treatment Issues," published by The Gay Men's Health Crisis in New York; and "PI Perspective," the Project Inform Newsletter, from San Francisco. These periodicals are available internationally by subscription. Outside the United States, non-governmental organizations working in HIV/AIDS may publish similar information.
10) Work With Your Doctor
Sometimes people feel that they have to choose between their physicians, trained in Western medicine, and alternative approaches such as acupuncture, laughter therapy, or nutritional therapies. But a good doctor will understand that you, as the patient, can do a great deal to create the conditions in your body to allow the physician's treatments to work better. Alternative treatments can set the stage for Western medicines to work. In other words, try to obtain the best of both worlds.
It is important to foster good communication with your doctor. The mind, the soul, and the body are all connected, and a wise doctor will use this connection to better the chances of specific treatments working. Let your physician know that you intend to do everything you can to be fully alive with HIV/AIDS.
Don't be afraid to ask your doctor questions about your health status, the disease process, and any medications he or she may prescribe. And when symptoms arise, don't just sit back and worry about them. Communicate with your health care provider. It often helps to bring a specific list of questions or issues to your doctor's appointment. That way you won't forget all the details of your concerns.
11) Stay Involved With Other People
For some people diagnosed with HIV/AIDS, there is a tendency to isolate themselves from other people. They may not want to "burden" others with their pain or suffering, they may want others to remember them as they were before their diagnosis, or they may be frightened of the stigma and rejection that is sometimes associated with a diagnosis of HIV or AIDS.
It really helps, however, to stay involved with others, to get away from your own problems for awhile, and focus on helping others. You may discover that your problems aren't quite as horrible or unique as you first thought; and you might discover that others can help you with your problems. You don't have to face this alone.
A community of faith is a good place to be involved with caring and supportive people. It not only supports your faith in living with HIV/AIDS, it can be a source of life-giving activity and involvement. When you are part of a church, you are part of the Body of Christ. As part of the body, your health affects the whole body. And the whole body can help support and sustain you in your life with HIV/AIDS.
12) Engage in Life
It is important to remember that engaging in life, and following your passion, will combat hopelessness. As long as we focus on that which we love about life, hope stands a much better chance.
Longterm survivors of AIDS tend to be involved in some sort of volunteer work in the HIV/AIDS movement, whether it is with a social service agency, a political action group, or a coalition for persons with HIV/AIDS. There is a connection between their longterm survival and the fact that they are involved in the cause. It helps to feel useful at a time when many people might expect you to be quite dependent or helpless. Volunteer work can help you stay active and gain some perspective on your situation.
Pursuing your goals can help you stay engaged in life and give you the motivation to work at taking care of yourself. Don't give up your goals and dreams just because you've been diagnosed with HIV or AIDS.
Part of fully engaging in life is accepting the reality of your mortality. The fact is that we will all die someday. These bodies will stop functioning at some point in the future. That point is unknown for everybody, even when you are living with HIV/AIDS. It could be tomorrow, or it could be years from now. No one is guaranteed that they will be here tomorrow, not even the one who gave you your diagnosis.
Even Jesus had to die, yet God raised Jesus from the dead and showed us that there is life beyond death. Even though our bodies stop functioning, our souls are eternal. In Christ, there is nothing to fear beyond death.
Realizing and accepting the fact that you will die someday can snap you into the present in a way you may never have experienced before. Accepting the reality of your mortality can give you an appreciation and hunger for life.
Accepting the reality of your mortality can motivate you to do everything you can to fight for your life. It has a way of making priorities clearer. Remember, however, that there are no guarantees: people with the best self-care programs and the best attitudes have still experienced the progression of HIV to the point of death.
How do you want to live your life between now and whenever it is that you die? Do you want to live it as if you're dying? Some people do. Others choose to engage in life, to be as fully alive as possible, and to do everything they can to create a quality of life that gives them joy.
There are many methods for helping yourself live with HIV/AIDS. These suggestions are just a few of the ways people have found to change hopelessness into hope, and to bring a sense of life in the face of a life-threatening illness.
Other techniques that some persons with HIV/AIDS have used include Chinese herbal treatments, acupressure, and acupuncture. Don't be afraid to pursue alternatives that you believe can help you.
Whatever you do, stay active and involved in your own treatment and in your own life. Take responsibility for your happiness, for the sake of your life. Now is the time to do everything you can to nourish your body, mind, and spirit.
Remember that God is with you, and God is greater than HIV/AIDS!
This pamphlet was written by the Rev. Dr. Stephen Pieters, a longterm survivor (since 1982) of HIV infection. Although diagnosed with full-blown AIDS, Kaposi's Sarcoma, and Lymphoma, he experienced the complete remission of his cancers while on an experimental drug in 1985. Rev. Pieters is the Field Director of AIDS Ministry for the Universal Fellowship of Metropolitan Community Churches.
For more information, write or call:
UFMCC AIDS Ministry
Universal Fellowship of Metropolitan Community Churches
5300 Santa Monica Blvd., Suite 304
Los Angeles, CA, U.S.A. 90029